In-home care in the final weeks

What home-based palliative care provides

Community palliative care teams are the backbone of end-of-life care at home. A community palliative care team typically includes specialist nurses (who visit regularly and can usually be reached by phone, including after hours in many areas), palliative care doctors, social workers, and allied health professionals. Together, they manage pain and symptoms, provide equipment, support the family, and ensure there is always someone to call.

The frequency of nursing visits increases as needs increase. Visits usually become more frequent in the final weeks, though how often depends on the service and where you live. Ask what happens after hours where you live.

If you are not yet connected to a community palliative care service, it is worth asking your treating specialist or GP about a referral. It helps to have the team in place before a crisis. The earlier the team is involved, the better the care.

After-hours and emergency support

Many community palliative care services have an after-hours phone line. If yours does not, ask the team who to call instead. This is one of the most important pieces of information you need to have in the final weeks. Write the number down and put it on the fridge, by the bed, and in your phone contacts.

When something changes at 2am, the after-hours line is usually the right first call. The exceptions are on the 000 list in the when to call guide: a seizure, choking, heavy bleeding, a bad fall, or danger to you all mean calling 000 straight away, unless the team has given you a written plan for seizures or bleeding. The palliative care nurse can advise whether the change is expected, can adjust medications remotely in many cases, and can come to the house if needed. Calling 000 can result in an ambulance attending and an emergency department admission that no one wanted.

Call 000 too if the person is in severe distress that the palliative care team cannot reach in time. Your palliative care team will tell you specifically what warrants an ambulance call for your particular situation.

Home nursing and personal care

Skilled home nursing can provide wound care, medication management, catheter care, medicines or fluids given under the skin (nurses call this subcutaneous), and regular clinical assessment. Personal care workers assist with showering, dressing, oral hygiene, and other daily activities when the person can no longer manage independently.

These services are separate from the palliative care team and are usually arranged through My Aged Care for people aged 65 and over, through NDIS for eligible people under 65, or through private providers. Your palliative care social worker can help arrange the right combination of services for your situation.

On 1 November 2025, a new government program called Support at Home replaced Home Care Packages. It includes a dedicated End-of-Life Pathway with short-term, higher-level funding to help people assessed as being in their final months stay at home. Because funding amounts and details are still settling in, check My Aged Care for the current program and funding that apply to you.

A note on what you pay: the government has deferred the planned price caps for Support at Home services, so there is not yet a single legal maximum price for each service. Other protections do apply. Providers must give you a monthly statement, the Aged Care Quality and Safety Commission can order refunds where a provider has overcharged, and the government publishes a quarterly national summary of Support at Home prices you can use to sense-check whether a provider's price looks reasonable. For the current position, see My Aged Care.

Equipment and home preparation

As the illness progresses, the home typically needs to accommodate changing physical needs. Common equipment includes a hospital-grade bed (which can be adjusted electronically and is far easier for carers to manage than a standard bed), a pressure-relieving mattress, a commode, a shower chair, a handheld urinal, and a hoist or transfer board if mobility is significantly reduced.

Most of this equipment can be hired or borrowed rather than purchased. Your palliative care nurse or occupational therapist can assess what is needed and arrange it. Do not wait until it is urgently needed to request equipment, as there can be short delays in delivery.

Think also about where the bed should be positioned: ideally in a room that is accessible, has good natural light, allows space for visitors to sit comfortably, and is close to a bathroom. Moving the bed to a ground floor room or a larger room often makes care significantly easier.

Managing pain and symptoms at home

Good symptom management in the final weeks requires regular reassessment, because what is working one week may not be working the next. Be specific with the palliative care team about pain levels, nausea, breathlessness, restlessness, and any other symptoms that are affecting comfort. Do not accept inadequate symptom control as unavoidable.

A syringe driver, a small device that delivers continuous medication under the skin, is often introduced in the final days or weeks when oral medication is no longer manageable or effective. Your palliative care nurse will manage this and explain what it involves. It is a routine and highly effective part of end-of-life care at home.

Your palliative care team will usually leave a small supply of medicines in the home for symptoms that can come on suddenly, such as pain, breathlessness, agitation or noisy breathing. Nurses often call these anticipatory or "just in case" medicines. Breakthrough medication, for sudden increases in symptoms between regular doses, is often among them. Give any of these only as written on the plan or chart the team has left in the home, and only if a nurse has shown you how. If you have not been shown, or you are not sure of the amount, call the team or the after-hours line rather than guess.

Keep track of how often you give it, counting across the full 24 hours including overnight, not just since you got up. If you are giving breakthrough medication three or more times in any 24 hours, let the palliative care team know. Giving those doses is the right thing to do. The count itself is useful information: it often means the regular dose needs adjusting, or that something has changed that the team should look at. You do not have to wait for the next visit to raise it. If the doses are not settling the symptoms, or the person is distressed and not easing, use the after-hours line at the time rather than waiting until morning.

Supporting the carer

Caring for someone at home through the final weeks is one of the most demanding things a person can do. Physically, emotionally, and practically, it is exhausting. The palliative care team's support is for the carer as much as for the person who is dying.

Tell the palliative care team how you are doing. Tell them if you are not sleeping, if you are overwhelmed, if you are afraid, or if you are not sure you can continue. They will not judge you. They will help. Carers who are not supported cannot provide good care, and the palliative care team knows this.

See the carer support guide and the respite care guide for more on maintaining your own wellbeing through this period.

When home is no longer possible

For some families, home-based care reaches a point where it is no longer safe or manageable. This can be due to the carer's health or capacity, the complexity of care needs, or the person's own wish to be somewhere with more clinical support around them.

This is not a failure. It is a recognition that circumstances have changed. If home care is becoming unmanageable, speak honestly with the palliative care team. They can help plan a transition to inpatient palliative care or a hospice, which will provide a higher level of clinical support while still focusing entirely on comfort and quality of life.